Friday, April 22, 2016

Joy

I've learned that gratitude is a vitally essential component to healing from illness.

For the next few weeks it's my job to find creative ways to be grateful for you.

I posted something on Instagram a day or two ago on how paying for my Lyme treatment has left us broke, as it does almost everyone who is faced with this insidious, painful, cruel disease.

As a freelancer, I pay 500$ a month for an insurance policy that does not cover my condition.
Insurance does not cover Chronic Lyme because the CDC does not recognize it as a treatable condition. My husband works full time as a teacher, but because his school has less than 50 employees, they are not obligated to provide benefits to their workers. Like me, David pays an exorbitant amount every month for private insurance.

This disease is relentlessly complicated and incredibly expensive- thousands and thousands and thousands of dollars for doctor visits, alternative therapy, pain management therapy, supplements, medication, medication to cover the side effects of the other medication. The cost has crushed us, but we refuse to accept that this potentially degenerative condition is untreatable. There are effective treatments- they are cutting edge, experimental, and expensive.

I've been thinking lately about a creative way to help raise money to help pay for my recovery. I am four months into what should be a year or more of intensive antibiotics. It's made me feel a lot better so far, but my recovery has reached a plateau, which I was warned could happen. My neurological issues have not improved, including diminished eyesight, muscle tremors, cognitive impairment and severe neuropathy pain.

My doctors are now recommending a treatment called Pulsed Electro Magnetic Frequency. It is a 30 hour treatment spread out over ten weeks. They have seen this method, PEMF, drastically change the course for people with illnesses that present neurologically, as mine has. The cost, unfortunately, is prohibitive. Three thousand six hundred dollars, on top of what we are already paying and already owe, is impossible. What we find the most daunting about this situation is the longer you wait to treat, the harder it becomes. Permanent brain damage is a very real possibility.

So, back to my brainstorming over what I could offer in return for donations. Yesterday I realized: there is no one thing that would appeal to everyone who is kind enough (and able!) to donate (and please note that I understand that there are many, many of us who are not in a position to donate) - so instead of trying to invent a one-size-fits-all thank you, I'll just ask you!

If you donate to my treatment fund by clicking here or on the yellow button at the top of the page, Paypal makes your email available to me. I will contact you via email, and we can discuss what would give your day the brightest little spark of joy as a thank you. Yesterday, after a few donations came in, I wandered around town with my best friend (and was out of the house for three hours! A record for me lately!) and browsed around for tokens of appreciation: gemstones, little packets of coffee, silver and gold bird banners, prints of mountains and funky camper vans, stackable brass rings...all sorts of things, all local to Asheville.

Of course, I can also offer any print you'd like from my collection of travel and landscape photos (I will post them next week) or homemade sea glass pendants from freshly picked sea glass, even essential oil and flower petal infused bath salts and other organic beauty products I make myself.

And finally, every gift comes with a hand written thank you letter. And as you know if you've donated to The Wilder Coast before....I really fill up that card! I guess I have a lot to say.

This photo was taken of me yesterday, during my time browsing about town feeling incredibly grateful. My mom says that I look that happiest she's seen my since I got sick....and I was.

Thank you. And if you're not in the position or mood to donate, the next best thing you can do for me? Is to read my blog. It helps to tell my story....it helps make everything better.

20 comments:

I left a small donation. I am currently going through incessant morning sickness with my 4th pregnancy, so while it in no way compares to what you are going through, I understand feeling awful 24-7 and just wanted to commiserate. No thank you tokens are necessary for my tiny token. I have loved following your blog for the past few years and wish you all the best in your recovery.

I for one want you to keep every dime of the small donation. Together I hope its somewhat substantial but I know its nothing compared to what you are facing.

Here are some suggestions (not trying to be nice or PC here and you can hate me after reading this) 1. Can you can get on Dave's policy as well as switch to a hdhp (high deductible health plan) You can try to negotiate by saying its a "life event" or wait till open enrollment. 2. negotiating with your part time writing gig to consider offering healthcare as a benefit?4. Husband to get side/part time gig with healthcare (since its a new job you maybe added on this policy)5. Wife to write down all fixed expenses and call all companies and negotiate better rates - mortgage, internet, accupuncture everything that can be negotiated.6. Really do the math for treatment abroad before you get knee deep in debt here7. Borrow from family8. Move in with a friend/family and rent out full home to try to cover mortgage and prop taxes.9. I usually hate gofundme campaigns since ive seen them misused (specifically for infertility when I was busting my ass to pay for IVF and stay at home ladies were just gofunding the whole thing). My prejudice aside I would suggest you do this. People really get into donating when there is a goal.10. Borrow against any asset you might have (home, 401k, pension, paycheck)11. Sell any asset you might have. No shame but still the last option.

Also if you did not itemize your tax filing - if you spent more than 10% of your adjusted gross income on medical expenses (accupuncture included) last year you can get a tax deduction. Even if you filed already you can make a correction. https://www.irs.gov/taxtopics/tc502.html

What is your total goal to see the light of recovery and how far along are you to reaching it? Go Fund Me. Will let you, and the people who love you track your progress. Collective joy. Pay attention to number 6 in the comments above from Sri. And the Tax adjustment is legit. You will surface from this. Look up Barrow Neuro Hospital in AZ. I know nothing about what you're navigating, but I know about them, and everything I hear from the inside track is good, innovative, personalized. Love you.

The donate button seems a bit touchy, but I got it to work on my 4th try. I hope your perseverance does the trick for you and the new treatment is successful. I feel so badly for all that you've suffered. You obviously have touched the hearts of many with your words and I hope your many friends can help you now, when you need it the most. I would love a sea glass pendant (not ornament as listed on the donation site) to remind me of you and your strength. Your writing is fresh, funny, frank, bittersweet and brilliant. Your wedding photo with the dinasaur was fantastic, as well as so many others of your wedding. I felt your angst so many times, which is the mark of a great writer. Hang in there, Melina. Get Well Soon!

I tried to link the button on the post, but it just kept failing! I am so sorry, the donate button is so touchy. There is a way to see it on the mobile version- scroll to the bottom of the page and click 'see web version.' Then it will show up on the top right of the page. I believe it might be a bit of a tricky process on the mobile device. Thank you so much for inquiring!!

A couple questions? I thought with Obamacare you cannot be denied insurance for chronic or pre-existing conditions? Have you researched this? Regardless, there are a few things to try..unless you already have..

1) you can ask for an appeal through your insurance. It will be reviewed by a committee. In the meantime it stops the bills for a while, while the appeal is reviewed.

2) you can apply for secondary insurance or Medicaid. See if you qualify? Do not be turned off by Medicaid. It's a wonderful insurance and isn't just for the indigent.

3) go to the website for the drug manufacturer of your antibiotics. Almost all drug makers offer up some form of financial assistance, especially for high $$$ drugs and chronic illness. It is not based only on your financial picture, they factor in the disease, the time needed for treatment etc. Its worth a shot!

Hi Janel! Good questions. Thankfully you're right, Obamacare assures that you cannot be denied insurance for chronic/pre-existing conditions. Sadly for me and thousands of others, Chronic Lyme is not recognized by Western Medicine as a treatable condition, thus it is not covered. The politics behind this disease are complex, and if you are interested I urge you to watch the documentary "Under our skin."

Regardless, I did file for an appeal with my insurance to cover some of the cost of my medicine andd visits with my Lyme doctor (which are 500 dollars each visit) but my claim was denied. Going to try again, and again...

Thank you for your caring response! This medical/insurance world is so hard to navigate...

Melina - I have been reading your blog for years and following your journey on IG (I am @happythis). One of my best friend's is also fighting the big fight to recover from Lyme's for a year now. Like you, Nancy is doing a combination of Western and Eastern medicine, and has dedicated a huge chunk of her existence to research, treatments, and clean living. We both are going to help you because lord it is expensive. Sadly enough Lyme's is a rich-person's disease because they are the only ones who can afford the variety of treatments available that are not covered under our healthcare system.

I want you to also know that Nancy is going to reach out to you next week; she cannot this week thanks to a crazy work schedule. I would like to ask which email should she use to reach you? She's not on IG and has been following your feeds through my phone. Feel free to reach out to me directly at jenniferpope19@gmail.com so that I can advise her how to contact you. We both are sending you good energy and vibes and praying for your recovery. It's going to be a long road, but I have hope that you will find a cure.

Donation made, hope it helps. Watched the fascinating Under Our Skin - I still can't get my head around the US healthcare system - it seems geared towards avoiding helping those that really need it... someone finds out they have an illness and tries to get additional coverage, but can't because it is not pre-existing?! That to me is crazy. Anyway, having followed the blog for a while I wanted to ask when you think this happened? Is something you have linked back to the migraines etc when you were kayaking in South America, or when you were ill in Seattle and saw the healer who recognized you had experienced frostbite? Or is this a recent development? (If the latter you really have had terrible luck with illness! Wishing you all the best in your recovery, and keep us updated on the donation pool!

I've been following you for a few years and have virtually loved you from day one.

I cannot begin to understand all your going through ... You are in my every positive intention!

No need to send me anything, but if you would check out my blog and youtube channel, that would be a win win. I get no traffic on either page, so you visiting would be exciting and I think you'll get a chuckle out of some of the things I've said or written.

When I clicked on the link in this blog post, it brought up a Paypal website https://www.paypal.me/MelinaCoogan which said, "Sorry about that... PayPal.Me isn't available in your country." (I'm in New Zealand.) But now I've clicked on the yellow "Donate" button on the upper right corner and it's opened up a Paypal website that I think will work? I'll try that one.